Monday, January 22, 2007

A Good Week

If he didn't have the scar on his head it would be tough to tell that anything is wrong with our Ronnie this week. He's eating like a horse, demanding everything, getting into everything, and in general acting like a 2-year old, go figure. It's wonderful to see. Let's hope he can keep this up.

I have asked more than one friend to let me know if I allow Ronnie to get by with too much. It's hard enough to discipline your children when they are well. I feel like every moment ought to be treated as precious yet there are times when Ronnie needs limits set. I'm trying. He had to sit in the time-out chair yesterday. I show him the clock and tell him 2 minutes, he stays in the chair for about 30 seconds but as long as the behavior doesn't continue, we're done. It's hard to get him to take a nap but I'm learning some tricks for that too.

There was an article in the Boston Globe today about how the period just after you receive a difficult diagnosis is usually the hardest for people to cope with, whether it's your own diagnosis or that of a close loved one. I can relate. We are entering the long haul of treatment after a very rough first two weeks. The struggles with establishing what will become for us a new normal has had it difficulties but we all seem to be doing well now.

Non brain tumor related thought of the day: Jon Stewart, on the Daily Show, once commented that perhaps the reason moderates get so little press/airtime/attention is that no one is taking to the streets shouting "Be Reasonable". I think those would be great words to live by. Why can't we take to the streets and shout "Be Reasonable"? I'd certainly buy the t-shirt.

Friday, January 19, 2007

No Preparation

On Sunday it will be one month exactly since my youngest son was diagnosed with a brain tumor. On Monday, he will be 2 years, 3 months old. I've heard the rule of thumb for boys is to measure them at 2 years, 3 months and double it for their predicted height when they are full grown. I intend to measure Ronnie's height on Monday.

We have him with us today and everything looks good for having him with us tomorrow. We're trying to keep that streak going as long as possible.

Ronnie's specific diagnosis is an inoperable pilocytic astrocytoma. If you have to have a brain tumor, it's the one to have. Even kids with inoperable pilocytic astrocytomas tend to do well. We're hoping Ronnie is one of those kids. His tumor is located in his brain stem. According to his films (the pictures they take with an MRI) it's amazing he can walk. But he can. And he can run, and throw, he's not so big on jumping but he can do that too. The doctors think he was probably born with this tumor and that he learned to walk around it.

Nothing prepares you for that moment when a doctor says your child has a brain tumor. You might think that you can imagine it but you really can't. In all my worries in 13 years as a mother, nothing compares to getting the worst case news. I've joined a club, not one that I want to be a member of, but a club nonetheless. My world has shifted but I find I'm not angry. Perhaps I'm just not angry yet. When people tell me that I'm holding up well, my standard response is that I have hope. I do. I have hope and it's not unreasonable for me to have hope. I would not be doing so well without it.

One thing I've been trying to do is spend at least part of each day thinking about something other than brain tumors. I have several distractions that work for me, knitting, sports, movies, so here's something I'm going to try with this blog.

Non brain tumor related thought of the day: I read Bill Simmons on a lot. I recommend it as a distration for anyone. As a result of some of his comments, I've thought, if I could have any professional players career, whose would I take. I've only figured it out for one sport though, football. If I could have any football player's career it would be Mike Vrabel, #50, New England Patriots. Three Super Bowl rings, defensive player BUT 8 career receptions, all for touchdowns, two in the Super Bowl. Yes, that's the career I'd have.